A Story of Childhood Asthma – Finally Some Answers
According to the American Academy of Pediatrics more than 23 million Americans suffer from asthma with more than a quarter of those being children younger than 18 years old. My son is among those numbers and this month I’m sharing his story for the first time. The first few years were rough but we’ve learned to cope with his diagnosis. This is not meant to serve as medical advice — it is simply what worked for us. As always, if you have medical questions, please visit your doctor. To read the full story, start here.
If you’ve been following along with my son’s story, you know that by this point in our journey to say we were discouraged is a serious understatement. We’d been told our son had everything from acid reflux to a brain tumor. At this point he’d lost 30% of his body weight and did not look well.
Not knowing what was wrong and not being able to do anything to help him was one of the most helpless feelings I’ve ever had in my life.
After a negative result on his MRI (thank goodness!) we went back to the pediatrician for some answers. The pediatrician was just as frustrated as we were and by that point it was clear he didn’t want to deal with it anymore. After a quick visit, he suggested we put my son on narcotics every night so he would sleep.
Narcotics.
For my 3 year old.
I left that appointment in tears. I was done being frustrated. At that point I was just angry. Someone had to be able to help my son and clearly loading him up on more drugs without a clear reason for doing so was not going to be the answer.
That night my husband and I discussed what our options were. I could hear my son coughing in the other room and knew it was only a matter of time before he threw up and we gave him his nightly bath.
I was at a loss. None of us could live like this anymore.
On a whim my husband looked up an allergy specialist. We found one not far from our house and the next day called to schedule an appointment. We didn’t have much hope that we’d get any answers from a new doctor but we didn’t have any choice but to keep trying.
That’s what you do as a parent. You keep fighting for your child when everyone else has given up.
We were fortunate enough to get in for an appointment quickly and I anxiously looked forward to that date. I had to hold onto any hope we had of getting my son some help.
Not all Asthma Looks like Asthma
The day of the appointment arrived and I showed up ridiculously early to make sure we got in. The doctor came in and started looking my son over as he asked about his history.
He was confident in the questions he asked. It seemed like he was leading me somewhere with them. He wanted to know about the Aspergers diagnosis, something my son’s pediatrician wasn’t even interested in discussing.
“Well, he said. He has asthma. Once we start him on the correct treatment he should be fine.”
The statement was so blunt that it caught me off guard, after all, we’d been told our son had several other conditions and so far we hadn’t seen any improvement. I explained to the doctor that his pediatrician had ruled out asthma early on because he never heard any wheezing.
“He isn’t wheezing much but I do hear a wheeze.” The doctor said. “And Kids with Aspergers do not present with typical asthma symptoms. Instead of wheezing, when he is having trouble breathing he throws up.”
The appointment was over in under 15 minutes. I went home with several prescriptions, including one for a nebulizer, and a little stunned that this doctor was so sure that he had an answer. I quickly filled the prescriptions and we started breathing treatments that night.
At midnight I lay in bed waiting for my son to start his nightly coughing fits. I heard a few coughs here and there but it didn’t get worse and my son stayed asleep. I stayed awake most of the night waiting for his symptoms to worsen but they never did and eventually I dozed off.
Getting Healthy Again
The breathing treatments worked miracles! Even when we found a treatment that worked, I expected it to take effect gradually. From that night on my son did not throw up again (with the exception of times when he caught a cold and his symptoms worsened).
I didn’t realize the weight of the burden I had been carrying until it had been lifted. My son gradually began to gain weight. His energy returned. It wasn’t long before we were telling him to stop jumping on the couch and throwing balls in the house.
He was on 4-5 medications daily but it was working. After his diagnosis we found out that we have a strong family history of severe asthma. Several family members even told us that their asthma makes them cough so hard they throw up. While that information would have been good to know a year earlier, it helped our journey make a bit more sense.
Looking back through my son’s history I could see the pattern. He had respiratory struggles at birth. He had several run ins with RSV and pneumonia. He had always been more susceptible to catching colds than my other children.
Today, he’s a healthy 8 year old and he only requires 1 maintenance medication to keep his symptoms at bay unless he catches a cold. When things were at their worst our pediatrician recommended that we move to San Diego or Hawaii if we really wanted to see an improvement in symptoms. I’m fairly certain he was joking but we were ready for a chance anyway so we packed up our house and moved to San Diego.
I so wish I could go back and give myself a pep talk during those years when we struggled to find a diagnosis. I wish I could show myself that my son could lead a normal life because at the time it seemed so out of reach. We’ve made lifestyle changes in our home as well and those have made an enormous difference.
Have any of your children been diagnosed with asthma? What was the process like for you? What lifestyle changes have you had to make because of it?
A Story of Childhood Asthma – Read the Entire Series
A Story of Childhood Asthma – When Diagnosis is a Mystery (Part 1)
A Story of Childhood Asthma – A Diagnostic Swing and a Miss (Part 2)
